March 15, 2021 • 25 mins
What happens if you get seriously ill or injured and can’t speak for yourself? Would it bring you peace of mind to know that your health care wishes would be respected in the event that you couldn't speak for yourself?
In this episode of the Legacy Purse, Leslie Sultan sits down with Paul Malley the president of Aging with Dignity, and they discuss ways to start the conversation about advanced care planning and end-of-life care, and how the Five Wishes, a legal document, helps facilitate this conversation. Listen and learn how the Five Wishes addresses the areas that matter most to people.
Leslie Sultan is an Estate Planning Attorney and the host of the Legacy Purse Podcast. She is known for talking about topics that show YOU how to protect your family, assets, generational wealth, and legacy.
www.SultanAttorney.com
Paul Malley is president of Aging with Dignity, a position to which he was named in 2002. He previously served as the organization’s communications director since 1998. With nearly 20 years of experience in the field of aging and advance care planning, Paul is a national expert, frequent speaker, and advocate for quality and dignified care at the end of life. He served on the Florida delegation for the White House Conference on Aging, and is a member of the National Coalition to Transform Advanced Care. Paul holds a Master of Arts degree in Communications from Florida State University.
www.fivewishes.org
This podcast is a product of Sultan Attorney and is produced and edited by Xavier Mejia.
Subscribe wherever you listen to your favorite podcast🎙or visit LegacyPurse.com
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Leslie Sultan (00:00):
I’m Leslie Sultan.
I am an estate planningattorney, and on this is the
podcast my guest and I discusstopics help make it easy for
you, the listener, to understandestate planning.
We breakdown complex legalconcepts into everyday
situations so that you canunderstand the‘why’ and‘how’ to
(00:21):
protect and buildintergenerational wealth.
We call it the Legacy Purse,because after all estate
planning is the gift you leaveyour loved ones.
Paul Malley (00:31):
One of the common denominators and common themes
that we hear from the familieswho have really had some of the
biggest challenges, whetherthey're calling us sometimes
from hospital waiting rooms, orthey've just left the hospital
and the loved ones there, andthey've gone back home and
they're trying to figure outwhat to do for mom or dad.
And there's a question aboutlife support treatment, or what
(00:53):
type of treatment happens next.
And they call our office andthey say, I just want to do the
right thing.
I want to do what my mom or dadwould want, but I don't know
what that is.
And my siblings and I can'tagree.
Leslie Sultan (01:08):
Today, we are going to talk about living wills
and a grassroots movement, aimedto empower individuals and
families by using an easy to uselegal advanced directive, which
is a document known as the fivewishes to talk about this unique
living will I have invited thepresident of aging with dignity
(01:28):
Palm Malley to join me today.
Welcome to the show, Paul, andthank you for joining me.
Paul Malley (01:33):
Thanks, Leslie.
It's great to be with you.
Appreciate it.
Leslie Sultan (01:35):
I know that aging with dignity has been around
since 1997 and that theorganization's work has been
featured on television and inprint over the last 25 years or
so.
Now we're in the COVID pandemic.
People are talking about theissues of incapacity end of life
and families are havingdiscussions that they might not
have thought to have before.
(01:57):
So people are forced to learnabout living wills, also known
as advanced directives and howthey can help facilitate
important decisions during thesetroubling times.
Please share with our listenersa little about the five wishes
and how it can contribute tothese conversations.
Paul Malley (02:14):
Sure, absolutely.
Um, and I think one of the mostimportant things to start off
with is by just acknowledgingwhat, uh, what our motivations
are, as you mentioned, uh, uh,direct a group called aging with
dignity.
It's a non-profit organization.
And our focus is just simply onhelping to maintain human
dignity where it's mostvulnerable.
And we know that it's oftentimesmost vulnerable during times of
(02:37):
serious illness.
And that's why over 20 yearsago, we created the five wishes
document, which is a type ofadvanced care planning.
And, uh, for those who might notbe familiar with that, I think
the simplest way to understandadvanced care planning is that
it's about making healthcaredecisions right now today, uh,
(02:58):
in you become seriously ill incase you're very sick and you're
not able to make your owndecisions any longer.
So 5 Wishes lets you do that.
People sometimes fill out 5wishes together as a family
around the dining room table orin a living room.
Our aim is to make it easy foreverybody to do.
Leslie Sultan (03:20):
Thank you, Paul.
And I really appreciate what yousaid about helping maintain
human dignity because thevisions I have are of someone
laying on a bed, you know, weare seeing these images floating
around of people, strapped tobeds on ventilators, wearing
only adult diapers during thisCOVID period.
And it's hard to imagine thathuman dignity component in those
(03:43):
scenarios.
So being able to bring it backto life is great.
I just love those words, uh,helping maintain human dignity.
I also appreciate that these canbe uncomfortable conversations
for people to have with theirloved ones.
So the image of people sittingaround the table, filling out
the five wishes form is such agreat contrast image to have.
(04:04):
And it's so helpful that you canmake it so much easier to give
people that voice when theycan't speak for themselves.
So if you can talk a little bitmore about the five wishes.
Paul Malley (04:15):
Thinking back 20 years ago, when we first created
five wishes, when we looked atthe available documents out
there, I think people have beentalking about living wills and
advanced directives for a longtime, but most of us haven't
filled one out for most adults,we think, Oh, that might, that
sounds like a good thing.
I might get to that someday whenI need it.
(04:36):
And then that someday nevercomes until it might be too late
when it's in the middle of ahealth crisis.
So we created five wishes with afew goals in mind.
Number one, we wanted to makesure that the document itself
met the legal requirements.
And we worked with the Americanbar associations commission on
law and aging to make sure thatfive wishes satisfied the
(04:59):
requirements in as many Statesas possible.
And today it meets therequirements in 42 States and we
also wanted it to include theimportant elements of advanced
care planning, like being ableto name a healthcare agent as
trusted decision maker, who youwould trust to make your, your
healthcare decisions for you.
(05:19):
If you're not able to speak foryourself and then giving some
instruction about life supporttreatment, when you'd want it or
not want it, those are some ofthe core components of, of good
advanced care planning where 5wishes takes it a step further
is that focus on human dignity.
It's asking questions about whatmakes you feel comfortable, how
(05:42):
you want to be treated, not justby the clinicians, but how you
want your family to treat youwho you want to be with you,
what you want your loved ones toknow cultural or spiritual
traditions or, or expectationsor hopes.
Those are the things that arebaked into five wishes.
And that's why I think, you know, more than now 35 million
people have turned to fivewishes as their way of
(06:05):
expressing their preferences.
And I think it's because it'swritten in language that makes
sense to most of us that we canunderstand.
And that means something to ustoo.
It's not only focused on thelegal and the medical questions
at the heart of it.
It gets to the heart of whatmatters most to each person and
their family.
Those are the questions that itasks and that's the door that it
(06:25):
opens for the conversation foryour family to have together or
your close friends.
Leslie Sultan (06:30):
Yeah.
And I've um, as an attorney, asa state planning attorney, I've
seen the standard, I don't knowif there's statutory or state
issued forms, but they're verydry.
So I can appreciate what thefive wishes are doing and taking
us down into the more imagery ofimagine this scenario.
Um,
Paul Malley (06:49):
Right.
And that's, and that's thebalance that tries to walk
because it does, it doesrecognize that this is a legal,
legal process.
You want to make sure thatyou've got all the legal issues.
Right, right.
You want to make sure the I'sare dotted and the T's are
crossed and also make it simpleto talk about together as a
family.
Leslie Sultan (07:06):
And you mentioned that there's 42 States out of
the 50, so what's with the otherStates, what would people do in
those States?
Paul Malley (07:13):
So in those States, uh, and, and right now they
include, uh, Texas, Ohio,Alabama, uh, New Hampshire,
Oregon, Kansas.
I think those are the eight.
Uh, if, if you or a familymember live in one of those
States, you can still use fivewishes.
It's a good place to start.
It's a good place to get theconversation going and write
(07:34):
your wishes down on paper.
Odds are, it would be followedin any hospital in any one of
those States.
Uh, but because of the statutoryrequirements in those eight
States, our suggestion is thatyou use the state form as well
as five wishes and put the twotogether to make sure your legal
bases are covered.
For some reason, the, you know,those laws that are on the books
(07:56):
and those eight States, I thinkthey're, uh, they're they're
leftovers from decades ago and,and they require residents of
that state to use that state'sparticular form.
Um, so that's why we wouldrecommend that you use the two
forms together if you live inone of those States.
Leslie Sultan (08:12):
And of course COVID sort of shifted
everything.
I know that generally it wasolder people that were mainly
thinking about these kinds ofscenarios.
Um, and clearly COVID, and evenin early 2020, we had co Kobe
Bryant dying.
Um, and I've noticed that, youknow, I'm in my forties, the
(08:32):
clients that I serve aregenerally in their forties and
we are not targeted in terms ofmarketing.
Estate planning attorneys arenot marketing to young people.
So we don't have theinformation.
We, we're just not informed.
We don't know a lot of peoplecall me to say, I want to do a
living will.
And I say, well, I think youmean a last will and testament,
we don't even have thevocabulary correct.
(08:53):
How does the 5 Wishes, um, spanthe conversation to include
younger people?
Paul Malley (08:58):
Uh, that is a great question because it's an
important point because that'susually a big misconception that
advanced care planning orthinking about living wills is
not something that you do untilyou're older, sick.
So nobody wants to putthemselves in that category,
right.
And say, that's me today.
Uh, but the reality is the mostdifficult cases revolving end of
(09:20):
life decisions where familiesare in disagreement and
oftentimes torn apart areoftentimes most oftentimes with
younger people, even in the, inthe legal world, when we think
about end of life decision,important cases, controversial
cases, I think of Terry Schiavo,Karen Ann Quinlan, Nancy Cruzan
(09:41):
the thing that all of thosewomen had in common.
They were young and in theirtwenties, in their twenties and,
and healthy before, you know,there was a medical crisis.
So, so our message is that thisis something that's important
for every adult, every person,18 and over should take
advantage of the right, that youhave to name a healthcare
(10:03):
decision maker and to giveinstructions about what your
treatment preferences would be.
If you become very sick andunable to speak for yourself.
And that's something, I think alot of people don't realize that
this is a right, that's writteninto law, that every adult has
that most just don't takeadvantage of.
We leave.
Most people leave it to chance.
They think, well, you know, ifI'm in a car accident and if I
(10:25):
get sick and I can't make my owndecisions, my family will figure
it out.
You know?
And, and maybe that would work.
But we also know from reallydifficult, challenging stories
that we've heard from familiesthat a lot of times it doesn't
work well.
You know, you can imagine todayfamily members trying to come
(10:46):
together to build familyconsensus about a treatment
decision for someone, whetherit's COVID or a car accident or
other health condition, that'sdifficult at its best and really
challenging at its worst.
So five wishes.
It's not going to makeeverything on that process,
(11:07):
simple and easy, but it's goingto make it a lot better because
it lets you make decisionstoday.
So that your family or yourclose friends, your loved ones,
they don't have to guess in thefuture.
When people have to guess aboutwhat you would want, that opens
all kinds of doors forchallenges, people trying to do
the right thing and make theright decision are just going to
(11:28):
land in different places onwhat, when they're asked what
you would want to do foryourself.
So don't let them scramble.
Don't let them second guess givethem some clear answers by
making these decisions ahead oftime for young people too.
Leslie Sultan (11:44):
Yeah.
It was just listening to anotherpodcast that an elder law
attorney was saying, you know,once you're 18, nobody can make
decisions for you.
It's only, that's when you needto start planning for
everything.
Paul Malley (11:54):
Yeah.
And it's both, and it's bothsides.
It's the legal side, which willbe dependent on state statute.
Oftentimes state statutes havepecking orders of who would make
decisions for somebody.
And it might mean it might pointto both parents.
Well, for that 20 year old saycollege student whose parents
might be divorced.
You know, what's therelationship like there?
(12:15):
How is that going to work out ifthey have to come together and
make a decision for their adultchild?
So there's, there's the legalworld.
And also the family relationshipworld that all come together in
this, uh, in, in, in thesesituations and can either work
(12:35):
hand in hand and go very welltogether or turn out to be a
disaster.
And we want to avoid thedisasters and they are, and they
are mostly avoidable by makingsome plans ahead of time.
Leslie Sultan (12:47):
I always like to have examples and I imagine
you've got some really goodexamples.
Um, if you could share, youknow, like to call them like a
nightmare story.
Um, and then maybe even also asuccess story where you've seen
the 5 Wishes or another advancedcare directive work for someone.
So if you could give us twoscenarios, because I think
people can really relate whenthey hear the live stories.
Paul Malley (13:10):
One of the things that motivates us aging with
dignity is hearing howchallenging these experiences
can be for families.
And one of the commondenominators and common themes
that we hear from the familieswho have really had some of the
biggest challenges, whetherthey're calling us sometimes
from hospital waiting rooms, orthey've just left the hospital
(13:32):
and the loved ones there, andthey've gone back home and
they're trying to figure outwhat to do for mom or dad.
And there's a question aboutlife support treatment, or what
type of treatment happens next.
And they call our office andthey say, I just want to do the
right thing.
I want to do what my mom or dadwould want, but I don't know
what that is and my siblings andI can agree.
(13:56):
And, uh, and I've, I've seen somany of those instances,
particularly with siblings whodisagree about what to do for
mom or dad when mom or dad canno longer speak and give the
clear definite direction ofhere's what I would want you to
do.
Siblings who are all looking outfor their parent and trying to
(14:17):
do the right thing, land indifferent places about what
right is.
So they, they want to dodifferent things.
And in the worst cases, we'veseen families split apart by
this.
Siblings that don't speak to oneanother after their parent has
passed, because they thoughtsomebody did the wrong thing.
So that can be avoided.
(14:37):
And then the opposite side, weknow of the 35 million
individuals who have used fivewishes.
Uh, some of those stories mightalso be difficult because it's
dealing with times of seriousillness, but family members have
called us to say, we knewexactly what my dad wanted and
we could provide it for him.
(14:58):
And then not just about lifesupport treatment, but it's
little things like, uh, havingpictures of grandkids in the
room and wish three and four.
It talks about how I want peopleto treat me and what makes me
feel comfortable.
And, uh, and some people willwrite in the margins specific
instructions.
Um, some will write that theylike a favorite scent of lotion.
(15:19):
Like when I remember one womanwriting in that she wanted lavin
that she loved lavender lotion.
So her family, as she wasnearing, the end of her life
went out and bought everylavender thing they could
possibly find.
And they were massaging herhands with lavender lotion and
they h ave lav flowers in theroom.
So it's beautiful.
(15:40):
Things like that that allow afamily member or a close friend
to say, I did everything that Icould to help my loved one.
And I did right by them thatthat's the success story is a
family being able to look backand say, we did the right
things.
It might've been, it was reallydifficult.
U m, but we did the rightthings.
(16:01):
We made the right decisions.
Leslie Sultan (16:03):
So for our listeners that are interested in
the 5 Wishes and they want toget a form for themselves so
they can fill it out.
I want to let them know that youcan go online to the website,
www.agingwithdignity.org.
And you can fill out a copyonline or download a hard copy
(16:24):
to fill out with a pen.
Can you talk a little bit moreabout that process, Paul,
Paul Malley (16:28):
Right.
There's yeah.
There's two different optionsand, uh, actually two different
locations where you can go forthe information.
You mentionedagingwithdignity.org is our
organization's website.
And also 5wishes.org hasinformation specific to 5
Wishes.
And, uh, and you can get abooklet.
It's a 12 page booklet that hasall the instructions that you
(16:50):
need, the information that youneeded to fill it out.
And you can fill it out with apen, check, some boxes, there's
some blank lines where you canwrite in some specific thoughts
in your own words.
And then it has to be signed,dated and witnessed by two
people.
So there's also an option on thewebsite where you can, uh, can
(17:10):
purchase five wishes online andtype in your answers on the
screen, and then print out a PDFthat's still ultimately needs to
be signed in pen today becauseof legal requirements and then
passed on to your healthcareprovider, your doctor and your
family as well.
Leslie Sultan (17:28):
Definitely worth mentioning is that this form is
in multiple languages, it's inSpanish.
Um, so when they're printing itin Spanish, they're signing it
in Spanish.
It's enforceable, even in theother language?
Paul Malley (17:39):
Our monolingual documents we have in English
only and Spanish only, but thenyou mentioned other languages.
We have 29 total.
So those other languages are inbilingual format.
So if someone fills out a fivewishes and Chinese or Vietnamese
or Polish or Hindi or Arabic orGujarati or Hebrew, or there's a
(18:00):
sample of some of them that wehave, it's a it's in bilingual
format.
So that language translation ison one side and the English
translation is on the other.
So that even family members whomight not speak the language of
their elder grandparents canunderstand.
And of course, healthcareproviders can understand as well
with the English translation.
(18:20):
Uh, and you know, we've heardamazing things with those
translations hospitals acrossAmerica use it.
And, uh, and for especially anelder person who does not have,
uh, the best English literacymight not be able to understand
all the hospital admissionsforms that they're given and
(18:41):
that they have to sign.
This is often the one healthcare document that's written in
their language that they canunderstand.
And, and, and that's similar towhat we heard.
Even when we, we introduced theEnglish version of five wishes.
I said, you know, this peoplesaid, this is written in, in
regular, everyday language.
It's not legalees or medicaljargon.
It's my, this, this is for me.
(19:02):
And that's what we always hopedwith five wishes is that people
would look at it and they wouldsee, this is for me, this is my
way of expressing what'simportant to me, to my family
and to my doctors and the peoplecaring for me.
Leslie Sultan (19:16):
So let's say someone goes online, they gel at
the form, they do it today.
Should they be updating itperiodically?
Where should they keep it?
What do you recommend?
Paul Malley (19:25):
Once you've completed the form?
I would really suggest startingwith yourself first and then
taking it to your family.
Maybe your spouse, significantother parents, grandparents, uh,
whatever the case might be.
And rather than putting them onthe spot and saying, Hey, as I
saw 5 Wishes, and I thought ofyou, you should really do this,
(19:48):
uh, which some people do.
And it might not go very well,but start with yourself first,
say to you know the familymember or the friend that you're
bringing it to, I filled thisout and I'd like you to, I'd
like to tell you what'simportant to me just in case I
ever get sick and you have tomake decisions for me.
And then as that conversationgoes on, ask them, you know,
(20:09):
what do you think about this?
Would you like to fill out fivewishes?
What would you want in thesesituations?
And then you can pull out yourspare 5 Wishes from your, your
back pocket or from a folder infront of you on the table.
And, uh, and then let them fillit out for themselves too.
And, uh, and then, you know,honestly the way that we, as a
(20:29):
small grassroots organizationhave been able to impact the
lives of so many people, uh, isbecause when people fell out
five wishes, they becomemotivated to share it with the
people around them, whetherthat's their family, it might be
the people at work, the peoplethat they could have church with
whatever their circles are, evenworkplaces from, you know,
(20:50):
employers with 10 employees to10,000 employees provide 5
Wishes to their, uh, to theiremployees and the people, the
people who they serve.
So we welcome that.
And if you have any questions,we have a national toll free
number that you can call it's onour website, but it's eight,
eight, eight, five wishes.
And if you have any questionsabout 5 Wishes, you can also
(21:13):
call us and we're happy toanswer those, uh, those
questions.
And of course, if you do workwith an attorney, uh, you can
bring 5 Wishes to your attorney.
A lot of attorneys provide 5Wishes to their clients as a
starting point, but if you'vepicked up five wishes and you
also work with them, attorney,make sure to bring it to them on
your next, uh, your nextconsultation and make sure it's
(21:34):
included in your, your, um,legal file, as well as your
medical record.
Leslie Sultan (21:39):
Paul, can you speak about the reasons that 5
Wishes is described as theliving will with a heart and
soul?
Paul Malley (21:47):
You know, the, the first time that was used was the
day after we introduced fivewishes in Florida, and there was
a story about it on the frontpage of the Miami Herald.
And that was the headline.
It said living will with heartand soul.
And, uh, and I think the reasonthat that stood out is because
when people look at 5 Wishes andthey look at the focus on human
(22:09):
dignity and comfort andspirituality, it's focused on
relationships, uh, they think ofthese, these are the things that
matter.
These are the issues of theheart and soul.
And that's how 5 Wishes kind ofwas given that tagline by those
who heard about it and learnedabout it and kind of dubbed it,
(22:30):
the living will with heart andsoul, and that has stood with it
for the past two decades.
And, and I think that's reallywhat makes five wishes stand
out.
In addition to being very usableand simple, to understand it
hits the issues that people saymatter most, which touch the
heart and the soul.
Leslie Sultan (22:49):
And so as we start wrapping up, is there
anything that maybe we didn'task?
Paul Malley (22:53):
One thing sometimes people ask is, uh, what, what
should I do if I try to startthis conversation in my family,
and nobody wants to talk aboutit.
So I'd say don't be discouragedand welcome to the club.
That means you're pretty normal.
Um, you know, this is it.
This can be a difficult topic toaddress.
Don't be discouraged if itdoesn't go well the first time,
(23:14):
or if you don't get through thewhole conversation in the first
time, continue to go back andplant seeds.
And, uh, and, and nobody wantsto be on the hot seat.
So really try, especially ifyou've tried before and it
didn't succeed, try this time bystarting with yourself first,
filling out five wishes, takingit to a family or close friend,
(23:34):
and using that as the launchingpoint for the discussion.
And if that doesn't work, thentry again another day.
Um, but don't be discouraged.
Leslie Sultan (23:43):
So dropping off copies of various family members
houses could be the little seedplanting, right?
Paul Malley (23:49):
Yeah.
That could, that, that couldwork.
And then I can, you know, youcan say, Hey, I filled this out.
Here's, here's your advancedcopy.
And let's talk about this nextweekend or whatever the case is.
Leslie Sultan (24:01):
How many copies should be distributed once it's
completed?
Paul Malley (24:04):
Once you've completed it make copies,
probably if you bring youroriginal to your doctor, your
doctor's office could makecopies, but I like to make my
own copies and give it to myfamily.
And then the next time that yougo to your doctor's office,
bring a copy and ask that it beincluded in your medical record.
You want it scanned in,especially in your medical
electronic medical record, makesure it's accessible to your
(24:26):
doctor and that it's included inyour medical records, so that if
you're in a different locationand your record is accessed, you
want your five wishes to bethere with it.
And then, uh, you had askedearlier about updating your
document.
It's important to know there'sno expiration date.
So a document remains validuntil it's either voided or
(24:48):
replaced.
So anytime you have a change inlife circumstance, a marriage, a
divorce death in the family, achange in your health condition.
It's important to go back andlook at your document, whether
it's 5 Wishes or if it's anotheradvanced directive that you or a
family member filled out yearsago, go back and look at it and
(25:08):
make sure it still reflects yourpreferences today.
And, uh, and then be sure toupdate it if you have new
information to write down.
Leslie Sultan (25:16):
Great.
I think that's great advice, andI'm really excited.
You came on today and sharedthis information with us.
Thank you for coming on toLegacy Purse.
Um, thank you for speaking aboutyour work with Aging with
Dignity and the mission of the 5Wishes.
The Legacy Purse was brought toyou by Sultan Attorney in New
York and produced and edited byXavier Mejia in Los Angeles.
(25:37):
You can support our podcast byliking this episode and
subscribing to it.
You can also support us byrating this podcast in your app.
And by following us on socialmedia@SultanAttorney for more
information on this episode,visit legacypurse.
com
I’m Leslie Sultan.
I am an estate planningattorney, and on this is the
podcast my guest and I discusstopics help make it easy for
you, the listener, to understandestate planning.
We breakdown complex legalconcepts into everyday
situations so that you canunderstand the‘why’ and‘how’ to
(00:21):
protect and buildintergenerational wealth.
We call it the Legacy Purse,because after all estate
planning is the gift you leaveyour loved ones.
Paul Malley (00:31):
One of the common denominators and common themes
that we hear from the familieswho have really had some of the
biggest challenges, whetherthey're calling us sometimes
from hospital waiting rooms, orthey've just left the hospital
and the loved ones there, andthey've gone back home and
they're trying to figure outwhat to do for mom or dad.
And there's a question aboutlife support treatment, or what
(00:53):
type of treatment happens next.
And they call our office andthey say, I just want to do the
right thing.
I want to do what my mom or dadwould want, but I don't know
what that is.
And my siblings and I can'tagree.
Leslie Sultan (01:08):
Today, we are going to talk about living wills
and a grassroots movement, aimedto empower individuals and
families by using an easy to uselegal advanced directive, which
is a document known as the fivewishes to talk about this unique
living will I have invited thepresident of aging with dignity
(01:28):
Palm Malley to join me today.
Welcome to the show, Paul, andthank you for joining me.
Paul Malley (01:33):
Thanks, Leslie.
It's great to be with you.
Appreciate it.
Leslie Sultan (01:35):
I know that aging with dignity has been around
since 1997 and that theorganization's work has been
featured on television and inprint over the last 25 years or
so.
Now we're in the COVID pandemic.
People are talking about theissues of incapacity end of life
and families are havingdiscussions that they might not
have thought to have before.
(01:57):
So people are forced to learnabout living wills, also known
as advanced directives and howthey can help facilitate
important decisions during thesetroubling times.
Please share with our listenersa little about the five wishes
and how it can contribute tothese conversations.
Paul Malley (02:14):
Sure, absolutely.
Um, and I think one of the mostimportant things to start off
with is by just acknowledgingwhat, uh, what our motivations
are, as you mentioned, uh, uh,direct a group called aging with
dignity.
It's a non-profit organization.
And our focus is just simply onhelping to maintain human
dignity where it's mostvulnerable.
And we know that it's oftentimesmost vulnerable during times of
(02:37):
serious illness.
And that's why over 20 yearsago, we created the five wishes
document, which is a type ofadvanced care planning.
And, uh, for those who might notbe familiar with that, I think
the simplest way to understandadvanced care planning is that
it's about making healthcaredecisions right now today, uh,
(02:58):
in you become seriously ill incase you're very sick and you're
not able to make your owndecisions any longer.
So 5 Wishes lets you do that.
People sometimes fill out 5wishes together as a family
around the dining room table orin a living room.
Our aim is to make it easy foreverybody to do.
Leslie Sultan (03:20):
Thank you, Paul.
And I really appreciate what yousaid about helping maintain
human dignity because thevisions I have are of someone
laying on a bed, you know, weare seeing these images floating
around of people, strapped tobeds on ventilators, wearing
only adult diapers during thisCOVID period.
And it's hard to imagine thathuman dignity component in those
(03:43):
scenarios.
So being able to bring it backto life is great.
I just love those words, uh,helping maintain human dignity.
I also appreciate that these canbe uncomfortable conversations
for people to have with theirloved ones.
So the image of people sittingaround the table, filling out
the five wishes form is such agreat contrast image to have.
(04:04):
And it's so helpful that you canmake it so much easier to give
people that voice when theycan't speak for themselves.
So if you can talk a little bitmore about the five wishes.
Paul Malley (04:15):
Thinking back 20 years ago, when we first created
five wishes, when we looked atthe available documents out
there, I think people have beentalking about living wills and
advanced directives for a longtime, but most of us haven't
filled one out for most adults,we think, Oh, that might, that
sounds like a good thing.
I might get to that someday whenI need it.
(04:36):
And then that someday nevercomes until it might be too late
when it's in the middle of ahealth crisis.
So we created five wishes with afew goals in mind.
Number one, we wanted to makesure that the document itself
met the legal requirements.
And we worked with the Americanbar associations commission on
law and aging to make sure thatfive wishes satisfied the
(04:59):
requirements in as many Statesas possible.
And today it meets therequirements in 42 States and we
also wanted it to include theimportant elements of advanced
care planning, like being ableto name a healthcare agent as
trusted decision maker, who youwould trust to make your, your
healthcare decisions for you.
(05:19):
If you're not able to speak foryourself and then giving some
instruction about life supporttreatment, when you'd want it or
not want it, those are some ofthe core components of, of good
advanced care planning where 5wishes takes it a step further
is that focus on human dignity.
It's asking questions about whatmakes you feel comfortable, how
(05:42):
you want to be treated, not justby the clinicians, but how you
want your family to treat youwho you want to be with you,
what you want your loved ones toknow cultural or spiritual
traditions or, or expectationsor hopes.
Those are the things that arebaked into five wishes.
And that's why I think, you know, more than now 35 million
people have turned to fivewishes as their way of
(06:05):
expressing their preferences.
And I think it's because it'swritten in language that makes
sense to most of us that we canunderstand.
And that means something to ustoo.
It's not only focused on thelegal and the medical questions
at the heart of it.
It gets to the heart of whatmatters most to each person and
their family.
Those are the questions that itasks and that's the door that it
(06:25):
opens for the conversation foryour family to have together or
your close friends.
Leslie Sultan (06:30):
Yeah.
And I've um, as an attorney, asa state planning attorney, I've
seen the standard, I don't knowif there's statutory or state
issued forms, but they're verydry.
So I can appreciate what thefive wishes are doing and taking
us down into the more imagery ofimagine this scenario.
Um,
Paul Malley (06:49):
Right.
And that's, and that's thebalance that tries to walk
because it does, it doesrecognize that this is a legal,
legal process.
You want to make sure thatyou've got all the legal issues.
Right, right.
You want to make sure the I'sare dotted and the T's are
crossed and also make it simpleto talk about together as a
family.
Leslie Sultan (07:06):
And you mentioned that there's 42 States out of
the 50, so what's with the otherStates, what would people do in
those States?
Paul Malley (07:13):
So in those States, uh, and, and right now they
include, uh, Texas, Ohio,Alabama, uh, New Hampshire,
Oregon, Kansas.
I think those are the eight.
Uh, if, if you or a familymember live in one of those
States, you can still use fivewishes.
It's a good place to start.
It's a good place to get theconversation going and write
(07:34):
your wishes down on paper.
Odds are, it would be followedin any hospital in any one of
those States.
Uh, but because of the statutoryrequirements in those eight
States, our suggestion is thatyou use the state form as well
as five wishes and put the twotogether to make sure your legal
bases are covered.
For some reason, the, you know,those laws that are on the books
(07:56):
and those eight States, I thinkthey're, uh, they're they're
leftovers from decades ago and,and they require residents of
that state to use that state'sparticular form.
Um, so that's why we wouldrecommend that you use the two
forms together if you live inone of those States.
Leslie Sultan (08:12):
And of course COVID sort of shifted
everything.
I know that generally it wasolder people that were mainly
thinking about these kinds ofscenarios.
Um, and clearly COVID, and evenin early 2020, we had co Kobe
Bryant dying.
Um, and I've noticed that, youknow, I'm in my forties, the
(08:32):
clients that I serve aregenerally in their forties and
we are not targeted in terms ofmarketing.
Estate planning attorneys arenot marketing to young people.
So we don't have theinformation.
We, we're just not informed.
We don't know a lot of peoplecall me to say, I want to do a
living will.
And I say, well, I think youmean a last will and testament,
we don't even have thevocabulary correct.
(08:53):
How does the 5 Wishes, um, spanthe conversation to include
younger people?
Paul Malley (08:58):
Uh, that is a great question because it's an
important point because that'susually a big misconception that
advanced care planning orthinking about living wills is
not something that you do untilyou're older, sick.
So nobody wants to putthemselves in that category,
right.
And say, that's me today.
Uh, but the reality is the mostdifficult cases revolving end of
(09:20):
life decisions where familiesare in disagreement and
oftentimes torn apart areoftentimes most oftentimes with
younger people, even in the, inthe legal world, when we think
about end of life decision,important cases, controversial
cases, I think of Terry Schiavo,Karen Ann Quinlan, Nancy Cruzan
(09:41):
the thing that all of thosewomen had in common.
They were young and in theirtwenties, in their twenties and,
and healthy before, you know,there was a medical crisis.
So, so our message is that thisis something that's important
for every adult, every person,18 and over should take
advantage of the right, that youhave to name a healthcare
(10:03):
decision maker and to giveinstructions about what your
treatment preferences would be.
If you become very sick andunable to speak for yourself.
And that's something, I think alot of people don't realize that
this is a right, that's writteninto law, that every adult has
that most just don't takeadvantage of.
We leave.
Most people leave it to chance.
They think, well, you know, ifI'm in a car accident and if I
(10:25):
get sick and I can't make my owndecisions, my family will figure
it out.
You know?
And, and maybe that would work.
But we also know from reallydifficult, challenging stories
that we've heard from familiesthat a lot of times it doesn't
work well.
You know, you can imagine todayfamily members trying to come
(10:46):
together to build familyconsensus about a treatment
decision for someone, whetherit's COVID or a car accident or
other health condition, that'sdifficult at its best and really
challenging at its worst.
So five wishes.
It's not going to makeeverything on that process,
(11:07):
simple and easy, but it's goingto make it a lot better because
it lets you make decisionstoday.
So that your family or yourclose friends, your loved ones,
they don't have to guess in thefuture.
When people have to guess aboutwhat you would want, that opens
all kinds of doors forchallenges, people trying to do
the right thing and make theright decision are just going to
(11:28):
land in different places onwhat, when they're asked what
you would want to do foryourself.
So don't let them scramble.
Don't let them second guess givethem some clear answers by
making these decisions ahead oftime for young people too.
Leslie Sultan (11:44):
Yeah.
It was just listening to anotherpodcast that an elder law
attorney was saying, you know,once you're 18, nobody can make
decisions for you.
It's only, that's when you needto start planning for
everything.
Paul Malley (11:54):
Yeah.
And it's both, and it's bothsides.
It's the legal side, which willbe dependent on state statute.
Oftentimes state statutes havepecking orders of who would make
decisions for somebody.
And it might mean it might pointto both parents.
Well, for that 20 year old saycollege student whose parents
might be divorced.
You know, what's therelationship like there?
(12:15):
How is that going to work out ifthey have to come together and
make a decision for their adultchild?
So there's, there's the legalworld.
And also the family relationshipworld that all come together in
this, uh, in, in, in thesesituations and can either work
(12:35):
hand in hand and go very welltogether or turn out to be a
disaster.
And we want to avoid thedisasters and they are, and they
are mostly avoidable by makingsome plans ahead of time.
Leslie Sultan (12:47):
I always like to have examples and I imagine
you've got some really goodexamples.
Um, if you could share, youknow, like to call them like a
nightmare story.
Um, and then maybe even also asuccess story where you've seen
the 5 Wishes or another advancedcare directive work for someone.
So if you could give us twoscenarios, because I think
people can really relate whenthey hear the live stories.
Paul Malley (13:10):
One of the things that motivates us aging with
dignity is hearing howchallenging these experiences
can be for families.
And one of the commondenominators and common themes
that we hear from the familieswho have really had some of the
biggest challenges, whetherthey're calling us sometimes
from hospital waiting rooms, orthey've just left the hospital
(13:32):
and the loved ones there, andthey've gone back home and
they're trying to figure outwhat to do for mom or dad.
And there's a question aboutlife support treatment, or what
type of treatment happens next.
And they call our office andthey say, I just want to do the
right thing.
I want to do what my mom or dadwould want, but I don't know
what that is and my siblings andI can agree.
(13:56):
And, uh, and I've, I've seen somany of those instances,
particularly with siblings whodisagree about what to do for
mom or dad when mom or dad canno longer speak and give the
clear definite direction ofhere's what I would want you to
do.
Siblings who are all looking outfor their parent and trying to
(14:17):
do the right thing, land indifferent places about what
right is.
So they, they want to dodifferent things.
And in the worst cases, we'veseen families split apart by
this.
Siblings that don't speak to oneanother after their parent has
passed, because they thoughtsomebody did the wrong thing.
So that can be avoided.
(14:37):
And then the opposite side, weknow of the 35 million
individuals who have used fivewishes.
Uh, some of those stories mightalso be difficult because it's
dealing with times of seriousillness, but family members have
called us to say, we knewexactly what my dad wanted and
we could provide it for him.
(14:58):
And then not just about lifesupport treatment, but it's
little things like, uh, havingpictures of grandkids in the
room and wish three and four.
It talks about how I want peopleto treat me and what makes me
feel comfortable.
And, uh, and some people willwrite in the margins specific
instructions.
Um, some will write that theylike a favorite scent of lotion.
(15:19):
Like when I remember one womanwriting in that she wanted lavin
that she loved lavender lotion.
So her family, as she wasnearing, the end of her life
went out and bought everylavender thing they could
possibly find.
And they were massaging herhands with lavender lotion and
they h ave lav flowers in theroom.
So it's beautiful.
(15:40):
Things like that that allow afamily member or a close friend
to say, I did everything that Icould to help my loved one.
And I did right by them thatthat's the success story is a
family being able to look backand say, we did the right
things.
It might've been, it was reallydifficult.
U m, but we did the rightthings.
(16:01):
We made the right decisions.
Leslie Sultan (16:03):
So for our listeners that are interested in
the 5 Wishes and they want toget a form for themselves so
they can fill it out.
I want to let them know that youcan go online to the website,
www.agingwithdignity.org.
And you can fill out a copyonline or download a hard copy
(16:24):
to fill out with a pen.
Can you talk a little bit moreabout that process, Paul,
Paul Malley (16:28):
Right.
There's yeah.
There's two different optionsand, uh, actually two different
locations where you can go forthe information.
You mentionedagingwithdignity.org is our
organization's website.
And also 5wishes.org hasinformation specific to 5
Wishes.
And, uh, and you can get abooklet.
It's a 12 page booklet that hasall the instructions that you
(16:50):
need, the information that youneeded to fill it out.
And you can fill it out with apen, check, some boxes, there's
some blank lines where you canwrite in some specific thoughts
in your own words.
And then it has to be signed,dated and witnessed by two
people.
So there's also an option on thewebsite where you can, uh, can
(17:10):
purchase five wishes online andtype in your answers on the
screen, and then print out a PDFthat's still ultimately needs to
be signed in pen today becauseof legal requirements and then
passed on to your healthcareprovider, your doctor and your
family as well.
Leslie Sultan (17:28):
Definitely worth mentioning is that this form is
in multiple languages, it's inSpanish.
Um, so when they're printing itin Spanish, they're signing it
in Spanish.
It's enforceable, even in theother language?
Paul Malley (17:39):
Our monolingual documents we have in English
only and Spanish only, but thenyou mentioned other languages.
We have 29 total.
So those other languages are inbilingual format.
So if someone fills out a fivewishes and Chinese or Vietnamese
or Polish or Hindi or Arabic orGujarati or Hebrew, or there's a
(18:00):
sample of some of them that wehave, it's a it's in bilingual
format.
So that language translation ison one side and the English
translation is on the other.
So that even family members whomight not speak the language of
their elder grandparents canunderstand.
And of course, healthcareproviders can understand as well
with the English translation.
(18:20):
Uh, and you know, we've heardamazing things with those
translations hospitals acrossAmerica use it.
And, uh, and for especially anelder person who does not have,
uh, the best English literacymight not be able to understand
all the hospital admissionsforms that they're given and
(18:41):
that they have to sign.
This is often the one healthcare document that's written in
their language that they canunderstand.
And, and, and that's similar towhat we heard.
Even when we, we introduced theEnglish version of five wishes.
I said, you know, this peoplesaid, this is written in, in
regular, everyday language.
It's not legalees or medicaljargon.
It's my, this, this is for me.
(19:02):
And that's what we always hopedwith five wishes is that people
would look at it and they wouldsee, this is for me, this is my
way of expressing what'simportant to me, to my family
and to my doctors and the peoplecaring for me.
Leslie Sultan (19:16):
So let's say someone goes online, they gel at
the form, they do it today.
Should they be updating itperiodically?
Where should they keep it?
What do you recommend?
Paul Malley (19:25):
Once you've completed the form?
I would really suggest startingwith yourself first and then
taking it to your family.
Maybe your spouse, significantother parents, grandparents, uh,
whatever the case might be.
And rather than putting them onthe spot and saying, Hey, as I
saw 5 Wishes, and I thought ofyou, you should really do this,
(19:48):
uh, which some people do.
And it might not go very well,but start with yourself first,
say to you know the familymember or the friend that you're
bringing it to, I filled thisout and I'd like you to, I'd
like to tell you what'simportant to me just in case I
ever get sick and you have tomake decisions for me.
And then as that conversationgoes on, ask them, you know,
(20:09):
what do you think about this?
Would you like to fill out fivewishes?
What would you want in thesesituations?
And then you can pull out yourspare 5 Wishes from your, your
back pocket or from a folder infront of you on the table.
And, uh, and then let them fillit out for themselves too.
And, uh, and then, you know,honestly the way that we, as a
(20:29):
small grassroots organizationhave been able to impact the
lives of so many people, uh, isbecause when people fell out
five wishes, they becomemotivated to share it with the
people around them, whetherthat's their family, it might be
the people at work, the peoplethat they could have church with
whatever their circles are, evenworkplaces from, you know,
(20:50):
employers with 10 employees to10,000 employees provide 5
Wishes to their, uh, to theiremployees and the people, the
people who they serve.
So we welcome that.
And if you have any questions,we have a national toll free
number that you can call it's onour website, but it's eight,
eight, eight, five wishes.
And if you have any questionsabout 5 Wishes, you can also
(21:13):
call us and we're happy toanswer those, uh, those
questions.
And of course, if you do workwith an attorney, uh, you can
bring 5 Wishes to your attorney.
A lot of attorneys provide 5Wishes to their clients as a
starting point, but if you'vepicked up five wishes and you
also work with them, attorney,make sure to bring it to them on
your next, uh, your nextconsultation and make sure it's
(21:34):
included in your, your, um,legal file, as well as your
medical record.
Leslie Sultan (21:39):
Paul, can you speak about the reasons that 5
Wishes is described as theliving will with a heart and
soul?
Paul Malley (21:47):
You know, the, the first time that was used was the
day after we introduced fivewishes in Florida, and there was
a story about it on the frontpage of the Miami Herald.
And that was the headline.
It said living will with heartand soul.
And, uh, and I think the reasonthat that stood out is because
when people look at 5 Wishes andthey look at the focus on human
(22:09):
dignity and comfort andspirituality, it's focused on
relationships, uh, they think ofthese, these are the things that
matter.
These are the issues of theheart and soul.
And that's how 5 Wishes kind ofwas given that tagline by those
who heard about it and learnedabout it and kind of dubbed it,
(22:30):
the living will with heart andsoul, and that has stood with it
for the past two decades.
And, and I think that's reallywhat makes five wishes stand
out.
In addition to being very usableand simple, to understand it
hits the issues that people saymatter most, which touch the
heart and the soul.
Leslie Sultan (22:49):
And so as we start wrapping up, is there
anything that maybe we didn'task?
Paul Malley (22:53):
One thing sometimes people ask is, uh, what, what
should I do if I try to startthis conversation in my family,
and nobody wants to talk aboutit.
So I'd say don't be discouragedand welcome to the club.
That means you're pretty normal.
Um, you know, this is it.
This can be a difficult topic toaddress.
Don't be discouraged if itdoesn't go well the first time,
(23:14):
or if you don't get through thewhole conversation in the first
time, continue to go back andplant seeds.
And, uh, and, and nobody wantsto be on the hot seat.
So really try, especially ifyou've tried before and it
didn't succeed, try this time bystarting with yourself first,
filling out five wishes, takingit to a family or close friend,
(23:34):
and using that as the launchingpoint for the discussion.
And if that doesn't work, thentry again another day.
Um, but don't be discouraged.
Leslie Sultan (23:43):
So dropping off copies of various family members
houses could be the little seedplanting, right?
Paul Malley (23:49):
Yeah.
That could, that, that couldwork.
And then I can, you know, youcan say, Hey, I filled this out.
Here's, here's your advancedcopy.
And let's talk about this nextweekend or whatever the case is.
Leslie Sultan (24:01):
How many copies should be distributed once it's
completed?
Paul Malley (24:04):
Once you've completed it make copies,
probably if you bring youroriginal to your doctor, your
doctor's office could makecopies, but I like to make my
own copies and give it to myfamily.
And then the next time that yougo to your doctor's office,
bring a copy and ask that it beincluded in your medical record.
You want it scanned in,especially in your medical
electronic medical record, makesure it's accessible to your
(24:26):
doctor and that it's included inyour medical records, so that if
you're in a different locationand your record is accessed, you
want your five wishes to bethere with it.
And then, uh, you had askedearlier about updating your
document.
It's important to know there'sno expiration date.
So a document remains validuntil it's either voided or
(24:48):
replaced.
So anytime you have a change inlife circumstance, a marriage, a
divorce death in the family, achange in your health condition.
It's important to go back andlook at your document, whether
it's 5 Wishes or if it's anotheradvanced directive that you or a
family member filled out yearsago, go back and look at it and
(25:08):
make sure it still reflects yourpreferences today.
And, uh, and then be sure toupdate it if you have new
information to write down.
Leslie Sultan (25:16):
Great.
I think that's great advice, andI'm really excited.
You came on today and sharedthis information with us.
Thank you for coming on toLegacy Purse.
Um, thank you for speaking aboutyour work with Aging with
Dignity and the mission of the 5Wishes.
The Legacy Purse was brought toyou by Sultan Attorney in New
York and produced and edited byXavier Mejia in Los Angeles.
(25:37):
You can support our podcast byliking this episode and
subscribing to it.
You can also support us byrating this podcast in your app.
And by following us on socialmedia@SultanAttorney for more
information on this episode,visit legacypurse.
com
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